Lyme disease – action to prevent and treat required

Lyme disease is on PEI, and action needs to be taken to prevent it’s spread, enable diagnosis, and allow effective treatment. A 2017 scientific study conducted by biologist Dr. Vett Lloyd of Mt. Allison University confirms that P.E.I. is home to blacklegged ticks. For her study, over 350 blacklegged ticks were collected from across P.E.I. Ten per cent of these ticks were found to be infected with Lyme.

Several Islanders have been travelling to see Dr. Richard Dubocq in Maine for diagnosis and treatment of Lyme disease. He has uses different tests (e.g. IGeneX blood test) to diagnose Lyme disease than are used on PEI (e.g. ELISA blood test). It is believed by advocates that the more sensitive tests available in US labs like iGenex can detect many more true Lyme cases, compared to the lower number of cases currently detected with the insensitive ELISA blood test currently used in PEI. (iGenex offers a tick panel which tests not only for Lyme but also for other serious tickborne diseases.)

In addition, Dr. Dubocq can prescribe long-term use of antibiotics to effectively treat the disease. On PEI Doctors are allowed prescribe antibiotics for a maximum of 21 days because of risk of C. difficile infection and drug resistance – even if they feel this is the necessary treatment for Lyme disease.

“There is a lack of adequate diagnosis and treatment due to flawed Canadian clinical guidelines…which means that many Islanders (and other Maritimers) are forced to spend $1000s out-of-pocket in order to seek more effective blood testing and medical treatment in the US.”

The following actions are being lobbied for by concerned Islanders, many of who have been directly impacted by Lyme disease:

Actions Requested

a) Education & Warnings

Health PEI needs to admit there is a problem and quantify it. There are a number of practical steps people can take to protect themselves from being bitten by ticks – and therefore getting Lyme disease (e.g. move playground equipment into sunlight). People need to be warned about the risks associated with getting bitten by ticks. In areas of PEI where Dr. Lloyd’s research has confirmed the presence of ticks with Lyme disease, signs should be posted.

b) Use IGeneX Blood Test on PEI

The IGeneX blood test should be available/used by doctors on PEI to help diagnose Lyme disease. iGenex is a CLIA-accredited lab that is widely recognized as credible/reliable by many US states and health organizations. It has a wide range of available tests for Lyme as well as other tickborne diseases (babesia, anaplasmosis, Rocky Mountain spotted fever, etc). iGenex offers a tick panel which tests not only for Lyme but also for other serious tickborne diseases.

c) Legislation for Long-Term Antibiotic Use

Long-term antibiotic use is required to eradicate Lyme disease in a patient (not unlike tuberculosis and rabies). Legislation is need to allow doctors on PEI to prescribe antibiotics long-term for treatment of Lyme disease. For example, in Maine legislators passed “An Act to Improve Access to Treatments for Lyme Disease” (HP0289, LD422 Item 1). Now physicians in Maine are free to appropriately treat for Lyme Disease without fearing that they might have their licenses to practice medicine revoked by health authorities.

Lyme Disease Fact Sheet (Feb 12, 2019)

CanLyme.org Fact Sheet

Lyme & Tick-borne Disease on PEI

Are Islanders really at risk? (There are no deer here, right?).

A scientific study by Dr V. Lloyd et al in 2017 collected over 460 ticks from 11 different vet clinics across PEI. Results: over 95% of the ticks were the dangerous “black-legged” type (aka deer tick) capable of carrying Lyme; over 10% of these dangerous ticks were actually infected with Lyme, and these infected ticks were found in every county across the Island (both urban & rural areas).

Disease surveillance data from CDC in US suggests that children ages 5-10 are the most likely to be bitten by ticks; over 1/3 are young adults under age 18. In 2013, CDC also admitted that over 90% of Lyme cases remain undetected due to the insensitive blood tests in current use. The true number of Lyme cases was therefore increased 10-fold – from about 30,000 to over 300,000 persons. A similar undetected burden exists in Canada.

ACTION REQUIRED: PEI Public Health needs to stop downplaying the actual risk of Lyme, and instead start posting public warning signs in high risk humid/grassy areas where ticks live. They should also implement targeted health promotion messages about Lyme in all schools asap, educating both children and parents.

PEI’s Chief Medical Health Officer should report in the legislature to all MLAs, not to the Minister of Health.

Local physicians know all about Lyme, and how to diagnose & treat it, right?

Many Island physicians are being told by Public Health that Lyme is virtually non-existent on PEI, with only 3 or 4 “officially reported” cases. In fact, there are many more people who are diagnosed and treated off-Island (eg Maine) so their data are not captured by official counts. CanLyme is aware of at least 10 Islanders who have been diagnosed with Lyme and related co-infections. This number is just the tip of a much larger Lyme iceberg.

The main blood test being used for detecting Lyme is called ELISA: it is very insensitive and systematically misses up to 50% of truly diseased cases. Many physicians are unaware of this, and as a result many patients affected with Lyme are given a misleading “false negative” diagnosis. Since Lyme will never resolve without a sufficient dose of antibiotic, the underlying untreated Lyme infection will only continue to spread and become more deeply entrenched in various organs & tissues. This leads to more serious debilitating or even fatal outcomes.

Current clinical guidelines (by IDSA) restrict the number of weeks that antibiotics may be prescribed, to a maximum of 30 days. However, these IDSA guidelines are not evidence-based, which is why they are not included in the inventory of credible guidelines maintained the US’s National Institute of Health. This current IDSA guideline is wishful thinking: it assumes that 100% of Lyme is acute, and that it can all be completely cured with 30 days of antibiotic. Most local physicians are unaware that this IDSA guideline is flawed.

Another set of clinical guidelines that is more evidence-based has been developed by the International Lyme and Associated Diseases Society (ILADS.org). It recognizes the reality – that over 1/3 of Lyme cases will continue to have persistent symptoms after an initial 30 day course of antibiotic. Longer-term treatment is needed.

In 2015, Maine passed an Act to improve access to effective long-term antibiotic treatment for Lyme. This Act served to recognize ILADS guidelines, and provided protection to physicians from possible sanctions or loss of medical privileges for those physicians who choose to treat persistent Lyme cases. (http://www.mainelegislature.org/legis/bills/bills_127th/billtexts/HP028901.asp)

ACTION REQUIRED: the PEI legislature needs to enact umbrella legislation to promote improved access to effective Lyme treatment, similar to Maine. Otherwise, those Islanders who are suffering from persistent Lyme will be forced to continue seeking appropriate diagnosis and treatment in Maine, paying $1000s out-of-pocket for physician consultations, prescription drugs and travel. The only guidelines in North America that meet US Institute of Medicine GRADE level requirements are those by ILADS; PEI should accept nothing less. These should be recognized by all health professionals and public health authorities (website & publications).